Women’s recovery journeys from Chronic Fatigue Syndrome towards wellbeing: A creative exploration using poetic representation

Abstract

Chronic Fatigue Syndrome (CFS) is a poorly understood condition, with an unclear aetiology. Due to diagnostic difficulty, CFS has frequently been dismissed by medical professionals as an untreatable “psychological issue” leading to patients not receiving adequate care for extended periods of time. This situation has led to patients feeling isolated, neglected, and misunderstood. CFS is more common in women than men, in an approximate ratio of 4:1; accordingly, we explore seven (7) women’s experiences of CFS and by adopting an idiographic approach seek to amplify the voices of a group of patients who have long been marginalized, and often dismissed. Findings are presented using a narrative research technique called poetic representation, wherein participants’ interview transcripts are cast into poetic forms. The condensed encapsulation of participants’ experiences through carefully crafted poetry adds an intensity that focuses readers’ attention more tightly than merely telling their stories. A small sample size commensurate with the study’s aim, enabled an in-depth exploration of each individual’s experiences. In the context of CFS, themes surrounding illness, diagnosis, treatment, wellbeing, and recovery were explored, focusing particularly on the potential for the recovery of a new life achieved through participants’ self-agentic psychosocial endeavors. The emerging poetic representations were clustered together in themes using a temporal framework, as follows: 1) Downhill to diagnosis; 2) From diagnosis to despair; 3) From despair to hope; 4) Looking back to move forward; 5) And, now. This research not only sheds light on the experiences of a puzzling illness, but also seeks to drive improvements in patient care through a more authentic understanding of the CFS lived experience.